Lord Saatchi’s proposed new legislation is not necessary to help cancer patients. Better public awareness and understanding are what is needed, argues Eric Watts
While I appreciate the serious problems faced by cancer patients and their relatives as described by Lord Saatchi in his article for HSJ, his article contains many errors. The law is not killing patients and the Medical Innovation Bill will not address the most important needs in cancer medicine − to increase research funding in tumour biology, to work with the pharmaceutical industry to produce more cost effective treatments and to help patients living with cancer.
I am interested in this field as following treatment for a spinal tumour (neuroblastoma), I took up a career in medicine and I have seen real progress in oncology and most patients are now living longer with their illness (details can be found on the Cancer Research UK website).
Innovation has lead to increasing cure rates, particularly in the field of leukaemia and related haematological cancers such as lymphoma. The cure rate of 70 per cent for childhood leukaemia has been achieved through meticulous and dedicated research in tumour biology, drug development and clinical studies − where doctors go to great lengths to explain the illness, the problems of treatments and the need for more knowledge through well planned research trials.
Ill chosen examples
This has been achieved without the Bill and the examples he gave of the law preventing progress are ill chosen. The examples he cites of deviating from standard procedures represent genuine negligence – failure to do the work properly or to adequately consider the consequences of unorthodox actions that have no parallel to the work of doctors introducing new treatments in controlled trials.
‘We are now beginning to appreciate that being given a diagnosis of cancer does not mean an immediate downward spiral’
In fact standard treatment now involves referral to or discussion with an oncologist who must offer patients the choice of suitable treatments and it would be negligent not to offer treatments or to mention the opportunity to participate in appropriate clinical trials (ie: to offer the opportunity of innovative treatments).
Regarding survival, put very simply, although more than one in three people will be given a diagnosis of cancer less than one in four die of it − the mortality is less than 75 per cent, not, as Lord Saatchi said, 100 per cent.
He has generalised from one case that is not representative of all cancers and he portrayed a stereotype that can easily harm the good work being done to increase understanding of the lot of cancer patients.
We have a hard enough time dealing with the illness and its treatment without having to fight the prejudice of a public that fears the illness through misinformation and ignorance. A balanced view of the history of cancer treatment can be found in Siddbartba Mukberjee’s book The Emperor of all Maladies, which won the 2011 Pulitzer Prize.
Fortunately we are now beginning to appreciate that being given a diagnosis of cancer does not mean an immediate downward spiral and now most people will survive more than five years after diagnosis. What is most important is that we improve the quality of that life, not by stereotyping patients as doomed, sad and defenceless, but by appreciating that, like others with long term or chronic conditions, we want to get back to normal and rejoin the mainstream of life.
‘A new law will not do as much good as a change in focus to the all the differing needs of people affected by cancer’
The Department of Health’s survivorship project contains examples of people’s difficulties with daily life such as getting back to work, which can be helped with rehabilitation.
This is where increasing public awareness is needed − we know that scientific research is making progress, albeit too slowly for those affected, and that end of life care presents real challenges which the palliative care community is actively engaged with. We need a better understanding of the common problems of cancer patients too often stigmatised through stereotyping.
Almost every time the disease is mentioned in the press the patient is portrayed as fighting courageously or losing the battle. Patients have often spoken of being set apart or cast out and have suffered blatant discrimination, for example regarding return to work.
Better informed debate
Some have spoken of the “apartheid of cancer”; very symbolic as apartheid itself is now history but cancer is with us and the effects can be life changing. Like many people, I found living with cancer very unsettling; once you have survived the operations and treatments you are released from care − like being parachuted into a new country but without a map − you carefully find your way as a changed person in a world without the certainties that made life manageable.
One soon learns that if you are open about your illness many will see you as a reminder of their own mortality, which invokes fear. This fear is heightened by negative stereotyping − so please let us have better informed public debates about cancer − it is a serious condition that will affect more than one third of us so let’s treat it and its effects on patients, relatives and carers seriously.
Cancer is a common condition and my current survey of the patients’ experiences is of many people living well and taking treatments that are well tolerated. It is time to appreciate that the stereotypes do not do justice to the everyday reality. A new law will not do as much good as a change in focus to the all the differing needs of people affected by cancer.
Eric Watts is medical adviser to the Conference of Cancer Self Help Groups